I was diagnosed with PA in my 30s. Quite a shock. I was on injections until last year when I was 70. I was told by my PCP that sublingual B12 would work. My last bloodwork indicated my B12 levels were off the charts. I've never, ever had high B12 results. I'm wondering if it could have been a mistake. I asked my PCP if I could go back to the injections and he said my B12 was high. My brain is so foggy and I feel like I'm not quite there. He said I have low iron anemia. I hate to sound like a hypochondriac, but I have dealt with this my whole life. I know I'm aging, but I'm very fit and work out at least three times a week. Just wondering if anybody else has dealt with this.
Thanks,
Connie
Written by
cdemarsh
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I would ask for, or if you already have one, post the results of an iron panel. It could still be B12 (B12 is complicated) but its easier to rule out iron first. They no doubt have a reason to say iron anaemia and your haematology and iron panel may show that.
Thanks. That was my main concern. My iron was low and I was feeling as you said, there could be more to it. It was 40 years ago that I was diagnosed. I'm a very healthy and active 71 year old. I didn't have these issues when I was doing the injections once a month. He has suggested possible infusion of iron. I'll have to wait and see. Thank again for your response.
"The Many Faces of Cobalamin (Vitamin B12) Deficiency" See especially Table 1 on "Misconceptions and Misbeliefs" associated with B12D. Full text available: ncbi.nlm.nih.gov/pmc/articl...
What can you do?
1. You can try writing to your doctor requesting reinstatement of injections. Letter templates: b12deficiency.info/writing-...
2. You can self source your own B12 like so many of us of do. If you would like to go this route, just ask and we will provide info .
Hi ConnieI have had a positive IFA test result and at the same time a high b12 result of 1504. I was told the high b12 result was the reason my IFA test was positive, I have since learned this is nonsense! I am fighting to get a PA diagnosis and further treatment, most clinicians know very little about treating PA and if you don't follow a set pattern or tick the right boxes you are denied treatment.
Keep fighting, in July NICE published new guidelines for treating B12 deficiency which may help you fight your corner. I will try and find them and add them on the feed. X
It is not unusal to have high B12 results when you are supplementing. I found that the supplements worked fine for me for many years until they didn't and I had pain in my toes. I ended up switching to injections. I hope you figure out what is happening. My dad used to say: if it's not broken, don't fit it. Maybe it would be better to go back to the injections? But you might also have something else going on and I hope you find a solution to it.
I think all was well for folks on B12 injections until Covid reared its head, and all of a sudden, the horror of patients needing injections other than Covid vaccines seemed to result in widespread changes from 'the needle' to 'the tablet' or other oral, self-administered B12. All of a sudden, getting any sort of appointment face-to-face became even more difficult. The fact that you'd been treated effectively for 40 years clearly had no bearing on the decision! There have been arguments that the incidence of B12 injections has been far higher than the incidence of PA, and that's probably true, but getting a diagnosis of PA is harder than it has been since we lost the Schilling Tests.
Good luck with the iron replacement, but just remember that iron deficiency will mask blood changes associated with lack of B12 or folate.
Keep in touch with this site, as there's no end of good advice and experience here, but don't take it as an alternative to your doctor.
as said above already by Hockey-player your b12 will show up high sometimes in the thousands when supplementing but this is normal. If you still are having symptoms of brain fog and fatigue etc you may need to restart the Nice guidelines injections every day until symptoms subside. Check vitamin D levels which need to be supplemented with good levels of vit d if ant the low end even if in range ) also and full iron panel. Good luck and keep your eye on here for more advice from our lovely knowledgeable friends. Also discuss with GP if there are any other possible causes.
If your B12 results (assuming serum total B12) are now sky-high but never have been previously, yet you are feeling symptomatic again, it might be worth having your MMA checked.
Your B12 could be building up in your bloodstream, not connecting well to MMA and so moving on to be effective at cell/tissue level as it should be. In which case, your serum MMA would also be high.
It is possible. It is known as functional B12 deficiency, and my GP picked up on this when I had B12 injections for B12 deficiency. I was not improving as hoped but continuing to deteriorate. So she got my MMA tested (not that easy from primary care) and gave me this diagnosis.
One to rule out as a possibility.
I see an Oral Medicine consultant for angular cheilitis and burning tongue who tells me to keep my ferritin above 80 ug/L. My ferritin, although never out of range, just low (my lowest was 36 ug/L) was a bit erratic for a couple of years. Similarly my folate was up and down.
Despite frequent B12 injections, my MMA took about 3 years to drop down into range, too.
Glad to hear you are at the gym three times a week at 71!
I'm just recovering from a broken ankle; first physio session - and having trouble just standing on tiptoes !
This is about broken ankles, for a change! They do get better, but it can take a while. I have not been through a metal detector since I had mine screwed and plated, [tib&fib] but I can imagine what will happen.
I'd never realised quite how common broken ankles were until I broke mine, which got in the way of Covid jabs. Then I found there were two others within a few doors of me. I was housebound at first, and although the surgery staff agreed that I qualified for a home visit for a jab, nothing happened. When I queried this, I was told that I wasn't sufficiently disabled, and should wait until I was mobile to go and get the vaccine. The mass vaccination centre staff, however, could not have been kinder. I was ready to stump my way in on crutches, but no, they insisted I had a wheelchair.
Physio? No, I didn't get any of that. It was a case of 'do your own'.
The ambulance service did an amazing job getting me to and from the hospital, apart from one person who complained all the way.
I got a big black boot and the fracture clinic surgeon told me if I was doing okay, not to come back just to be told "you're doing okay" - they'd run out of crutches and painkillers, so I'm guessing snowed under. Decided to cancel the 6-week review and went instead to a physio at the surgery, just to check, and get told "you're doing okay" (but cheaper than a surgeon saying it))- and really doubt I'll need to go back, now I have my exercise sheet.
Unlike you, my unstable fracture stabilised itself without surgery or plaster even- just an ill-fitting boot which I wore at night mainly, and a trio of donated walking-sticks. Colour-coordination still important, even when only able to wear flipflops !
I started with a 'backslab', then surgery, and worked my way up to a big black boot, which I still have. I had new crutches, but the physio gave me a Zimmer frame. I thought 'but they're for old folks' and then looked in the mirror! Since then, I've managed a full shooting season [rough shoot, hill farm] but did invest in some gamekeeper lace-up boots, and all is well. The tiptoeing will be back. I have not taken up tap dancing yet.😘
For many people, orals don't work as well as injections. The test will be high on supplements, but it doesn't mean anything. If your GP won't give injections, self-inject, as that is what was working for you before. Also, inject the same salt as was used for your treatment before. As someone else said before me, don't fix something that ain't broken.
Also, there is at least one study that says that cyanocobalamin orals are better than methyl ones. Also, all the studies that claim equal effectiveness of orals vs injections use cyanocobalamin and not methylcobalamin. Did you take methyl ones? If so, you can try to switch to cyano. Note that, however, it can take 2-3 weeks before things stabilise on a new salt and about a month before you start seeing the results. Please see this:
cdemarsch - If you are deficient, the ideal B12 number is a level that "prevents" symptoms. . Doctors that understand this condition will be guided by "symptoms" and not numbers on pieces of paper. If you had "no" symptoms on injects you should not stop injections. It is my understanding if diagnosed with PA injections are for life. Lab ranges are for people "not" on treatment. It will be good to have your iron level checked. Many people on inj have readings >2,000 pg/mL..Doctors who are not familiar with B12 deficiency think differently, they may tell you it is too high.
'Treat the patient, not the numbers.' That should be a watchword for all of them. Likewise, 'Listen to the patient telling you the diagnosis' can be helpful!
There are times when I think I'd be better going to the vet. However, I might end up with 'the collar of shame' and that would be inconvenient.
I live in America. Not sure where you are, but my we have to have prescriptions for the B12 and for syringes. I got a response through my doctor's portal that my B12 was high when I suggested I wanted to go back to injections. I think I'm going to have to either find a blood specialist, or find a doctor that understands PA. Thanks.
cdemarsh: I to am in the US (IL). You will find it very difficult to find a doctor who understands this condition. The PAS society has established an American PAS society. They have a zoom conference usually every month. Julie Wichlin heads up the US group.. I recommend this in addition to the FB group I suggested. You are not alone...
Bonjour Connie! I cannot absorb correctly the B12 if not by injection. I can have my blood saturated of it, it does not get where it is supposed to function. Fight for the injections! That being said, you can also have other deficiencies but b12 is a nasty misunderstood vitamin. Bonne chance!
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